Healthcare providers' experiences of maternity care service delivery during the COVID-19 pandemic in the United Kingdom: a follow-up systematic review and qualitative evidence synthesis.

Problem And Background: During the COVID-19 pandemic, there was substantial reconfiguration of maternity care services, affecting both users and healthcare providers (HCPs), in the United Kingdom (UK) and globally.

Aim: To further our understanding of the impact of maternity service reconfigurations in the UK, from the perspective of maternity HCPs.

Methods: Scopus, MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane COVID Study Register were searched for relevant studies reporting qualitative data from the UK, published in English between 01 June 2021 and 30 September 2023.

Post-Pandemic Maternity Care Planning for Vaccination: A Qualitative Study of the Experiences of Women, Partners, Health Care Professionals, and Policy Makers in the United Kingdom.

Maternal vaccination during pregnancy, in general and against COVID-19 infection, offers protection to both mother and baby, but uptake remains suboptimal. This study aimed to explore the perceptions regarding COVID-19 vaccination in pregnancy, particularly for marginalised populations and those living with social or medical complexity. A total of 96 semi-structured in-depth interviews were conducted with 40 women, 15 partners, 21 HCPs, and 20 policy makers, across all four nations of the United Kingdom (UK), discussing their lived experience of utilising, delivering, or developing policy for COVID-19 vaccination in pregnancy during the pandemic.

Shared decision-making and disease management in advanced cancer and chronic kidney disease using patient-reported outcome dashboards.

Objectives: To assess the use of a co-designed patient-reported outcome (PRO) clinical dashboard and estimate its impact on shared decision-making (SDM) and symptomatology in adults with advanced cancer or chronic kidney disease (CKD).

Materials And Methods: We developed a clinical PRO dashboard within the Northwestern Medicine Patient-Reported Outcomes system, enhanced through co-design involving 20 diverse constituents. Using a single-group, pretest-posttest design, we evaluated the dashboard's use among patients with advanced cancer or CKD between June 2020 and January 2022.

Improving Parkinson's Disease Care through Systematic Screening for Depression.

Background: Depression is common in Parkinson's disease (PD) but is underrecognized clinically. Although systematic screening is a recommended strategy to improve depression recognition in primary care practice, it has not been widely used in PD care.

Methods: The 15-item Geriatric Depression Scale (GDS-15) was implemented at 5 movement disorders clinics to screen PD patients.

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

Background: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available.

Objective: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement.

Women's experiences of maternity care in the United Kingdom during the COVID-19 pandemic: A follow-up systematic review and qualitative evidence synthesis.

Background: Maternity care services in the United Kingdom have undergone drastic changes due to pandemic-related restrictions. Prior research has shown maternity care during the pandemic was negatively experienced by women and led to poor physical and mental health outcomes in pregnancy. A synthesis is required of published research on women's experiences of maternity care during the latter half of the COVID-19 pandemic.

The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact.

Introduction: The Cystic Fibrosis (CF) Foundation sponsored the design, pilot testing, and implementation of the CF Learning Network (CFLN) to explore how the Foundation's Care Center Network (CCN) could become a learning health system. Six years after the design, the Foundation commissioned a formative mixed methods evaluation of the CFLN to assess: CFLN participants' understanding of program goals, attributes, and perceptions of current and future impact.

Methods: We performed semi-structured interviews with CFLN participants to identify perceived goals, attributes, and impact of the network.

Utilization Patterns and Outcomes of People With Diabetes and COVID-19: Evidence From United States Medicare Beneficiaries in 2020.

Objective: Determine differences in utilization patterns, disease severity, and outcomes between patients with and without diabetes mellitus diagnosed with COVID-19 in 2020.

Research Design And Methods: We used an observational cohort comprised of Medicare fee-for-service beneficiaries with a medical claim indicating a COVID-19 diagnosis. We performed inverse probability weighting between beneficiaries with and without diabetes to account for differences in socio-demographic characteristics and comorbidities.

Enhancing Care Partnerships Using a Rheumatology Dashboard: Bringing Together What Matters Most to Both Patients and Clinicians.

Objective: Dashboards can support person-centered care by helping people partner with their clinicians to coproduce care based on preferences, shared decision-making, and evidence-based treatments. We engaged caregivers of children with juvenile idiopathic arthritis (JIA), adults with rheumatoid arthritis (RA), and clinicians in a pilot study to assess their experiences and the utility and impact of an electronic previsit questionnaire and point-of-care dashboard to support coproduction of rheumatology care.

Methods: We employed a mixed-methods design to assess users' perceptions of a customized electronic health record rheumatology module at four pediatric rheumatology practices and two adult rheumatology practices.

Harnessing the Collective Expertise of Patients, Care Partners, Clinical Teams, and Researchers Through a Coproduction Learning Health System: A Case Study of the Dartmouth Health Promise Partnership.

The coproduction learning health system (CLHS) model extends the definition of a learning health system to explicitly bring together patients and care partners, health care teams, administrators, and scientists to share the work of optimizing health outcomes, improving care value, and generating new knowledge. The CLHS model highlights a partnership for coproduction that is supported by data that can be used to support individual patient care, quality improvement, and research. We provide a case study that describes the application of this model to transform care within an oncology program at an academic medical center.

Patient-Reported Outcome Dashboards Within the Electronic Health Record to Support Shared Decision-making: Protocol for Co-design and Clinical Evaluation With Patients With Advanced Cancer and Chronic Kidney Disease.

Background: Patient-reported outcomes-symptoms, treatment side effects, and health-related quality of life-are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients' symptom monitoring, shared decision-making, and effective use of the health care system.

Objective: The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes.

Eliciting patients' healthcare goals and concerns: Do questions influence responses?

There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to categorize the goals and concerns elicited by two different pre-visit questions, and (ii) describes associations between responses elicited and the phrasing and delivery of the two questions.

Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System.

Background: Despite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS.

Methods: A modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance.

Impact of the COVID-19 pandemic: How our response is shaping the future of cystic fibrosis care.

The findings of this body of work are presented in the eight articles included in this supplement. The impact and perspectives of adult and pediatric care teams and patient/families are covered with special attention to mental health care, the financial and personnel impacts within care programs, the experiences of vulnerable and underrepresented patient populations, and implementation of remoting monitoring. Commentaries from colleagues provide a broader perspective, offering reflections on the findings and their implications regarding the future CF care model.

International, national and local trends in the spread of COVID-19: a geographic view of COVID-19 spread and the role to be played by coproduction.

Background: COVID-19, a respiratory disease caused by the SARS-CoV-2 virus, emerged in 2019 and led to a worldwide pandemic in 2020. The COVID-19 pandemic has been a massive natural experiment in the formation of mitigation strategies to prevent cases and to provide effective healthcare for those afflicted. Regional differences in the impact of the pandemic on morbidity and mortality have been driven by political and regional differences in the coproduction of public health and social policy.

Point-of-care dashboards promote coproduction of healthcare services for patients with inflammatory bowel disease.

Background: Coproduction of healthcare services by patients and professionals is seen as an increasingly important mechanism to support person-centred care delivery. Coproduction invites a deeper understanding of what persons sometimes called 'patients' bring to development of a service. Yet, little is known about tools that may help elicit that information.

A 'COVID Compass' for navigating the pandemic.

Introduction: The greatest challenge confronting political, public health, business, education and social welfare leaders in the COVID pandemic era is to restore the economy, businesses and schools without further risking public health. The 'COVID Compass' project aims to provide helpful information to guide local decisions by tracking state and local policies over time and their impact on a balanced set of outcomes-health metrics, economic trends and social hardship indicators.

Methods: We selected a parsimonious set of 'local level' health, economic and hardship outcomes and linked them to 'local level' actions aimed to decrease COVID-19 health effects and to mitigate hardship for people, businesses and the economy.

International, national and local trends in the spread of COVID-19: a geographic view of COVID-19 spread and the role to be played by coproduction.

Background: COVID-19, a respiratory disease caused by the SARS-CoV-2 virus, emerged in 2019 and led to a worldwide pandemic in 2020. The COVID-19 pandemic has been a massive natural experiment in the formation of mitigation strategies to prevent cases and to provide effective healthcare for those afflicted. Regional differences in the impact of the pandemic on morbidity and mortality have been driven by political and regional differences in the coproduction of public health and social policy.

Development of Balanced Whole System Value Measures for Inflammatory Bowel Disease Care in the IBD Qorus Collaborative Using a Modified Delphi Process.

Background: The IBD Qorus Collaborative aims to reduce variation and increase the value of care for the adult inflammatory bowel disease (IBD) community. To evaluate the success of the collaborative, we aimed to develop a balanced set of outcome measures that reflect a multistakeholder view of value in IBD care. To achieve this, we used the Clinical Value Compass framework and engaged a mixed-stakeholder group to conduct a modified Delphi process.

COproduction VALUE creation in healthcare service (CO-VALUE): an international multicentre protocol to describe the application of a model of value creation for use in systems of coproduced healthcare services and to evaluate the initial feasibility, utility and acceptability of associated system-level value creation assessment approaches.

Introduction: Coproduction introduces a fundamental shift in how healthcare service is conceptualised. The mechanistic idea of healthcare being a 'product' generated by the healthcare system and delivered to patients is replaced by that of a service co-created by the healthcare system and the users of healthcare services. Fjeldstad offer an approach for conceptualising value creation in complex service contexts that we believe is applicable to coproduction of healthcare service.

Using Electronic Health Record Portals to Improve Patient Engagement: Research Priorities and Best Practices.

Ninety percent of health care systems now offer patient portals to access electronic health records (EHRs) in the United States, but only 15% to 30% of patients use these platforms. Using PubMed, the authors identified 53 studies published from September 2013 to June 2019 that informed best practices and priorities for future research on patient engagement with EHR data through patient portals, These studies mostly involved outpatient settings and fell into 3 major categories: interventions to increase use of patient portals, usability testing of portal interfaces, and documentation of patient and clinician barriers to portal use. Interventions that used one-on-one patient training were associated with the highest portal use.

Formative evaluation of a dashboard to support coproduction of healthcare services in cystic fibrosis.

Background: Healthcare coproduction engages patients and clinicians to design and execute services, yet little is known about tools that facilitate coproduction. Our objective was to understand uptake, experiences, benefits, and limitations of a dashboard to support patient-clinician partnerships within the cystic fibrosis (CF) community.

Methods: People living with CF (PwCF) and clinicians co-designed a dashboard that displayed patient-reported and clinical data.

A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

Background: New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF).